Friday, December 26, 2008

This was a tough Christmas for me! I tried to pace myself through the holidays, but it didn't seem to work. Then, I tried to push through the holidays, and that didn't seem to work any better! I'm not sure what lessons I learned. I don't know what I would do differently, and yet this didn't work out very well. That encapsulates my feelings about this whole CFS thing. If I'm going to live with this, then something has to change. I just don't know what or how.

Tuesday, December 23, 2008

Let's call it the year of learning about Christmas. Let's call it trial and error and error and error. Let's promise ourselves that next year will be better ... and we'll keep this post in cyberspace for reference to make sure that happens.

In review: Parade -- not necessary, certainly not worth it. It lasted way too long and my kids only enjoyed the floats that were throwing candy. Selfishness at the beginning of Christmas is not the way to start out.

Decorating -- worth it. Especially when I let the kids take over. For the first time, I didn't fuss too much over where the snow village would be or where to make our little Santa's village. And the kids easily did as well as I would have.

Church Christmas party -- worth it! It was short and simple and delicious with a true Christmas spirit about it.

Kids' Christmas choir concert -- I think I'll let Rom do this one next time. The girls did a great job, but the choir director is crazy! It was way too long -- over an hour and a half -- and it was on backless benches. It killed me.

Cookies -- all right. This is a tough one! This tradition is beloved by everyone who gets our fabulous Christmas cookies. My family loves the look on their faces when we show up at the door. The only problem? I was the little red hen this year -- "Who wants to help bake the cookies?" "Not I" said the children in unison. I did too much of the work. Next year, I can start in November and freeze cookies, and I can give the children better assignments. I don't want to have to sit out the fun part of delivering next time because I'm too wiped out.

Tree -- I threatened to buy a fake tree next year. This was very disappointing to me. I need to find a way to start the outing off on the right foot. If I can't do that, Rom and I will get it ourselves next year.

Children's Christmas program -- worth it! But only if it isn't sandwiched between other activities. Then I'll have to let Rom handle it.

Nightly Christmas stories -- worth it, but we may need to expand our selection. The kids are getting bored with the same ones every year.

Caroling -- this was a new one. It's not a tradition, so it can go, if I'm not up to it. I love the smiles on people's faces, though, when we show up. We'll see.

And through it all, I need to focus on the simple symbols of Christmas that bring joy to my heart and remind me what this is all about. I lost that this year, and I don't want it to happen again.

Friday, December 19, 2008

My husband and I just celebrated our 20th wedding anniversary! We didn't go overboard -- I worked at the store to give him a day off, he bought me See's candies, we went out to dinner. I find it less and less necessary for us to produce these big showy displays of declaring our love. And, last night, it became very clear to me why.

He is my hero every day. I really think he has super powers. He shields me from the piercing bullets my kids shoot me. He can dissipate frustration and induce calm with a single hug. He can read my mind and anticipate my every desire. With a single decree, he can change the world (you know, within our household).

He has spent 20 years spoiling me and supporting me and cheering me and encouraging me and making me very, very happy. I think about who I was when I came into this marriage. I didn't even know who I was. He didn't try to create me or mold me into the person he wanted me to be. Instead, he let me become who I wanted to be -- and when I thought that person was out of my reach, he opened my eyes and showed me I was capable of much more than I ever thought possible.

We are still madly, passionately in love! Here's to the next 20 years ... and the next!

Monday, December 15, 2008

Binging: This was the great cookie week-end. When we first moved here 5 1/2 years ago, I started a tradition in our neighborhood. I baked a bazillion cookies and our family delivered them to each home on the street, complete with antler ears and caroling. We did it the first week-end of December to kick off the Christmas season. Our neighbors loved it, and I have continued it year after year. This year, we postponed our cookies until the second week-end, and a few of our neighbors were getting nervous. You see? This is a tradition that we can't let go of.

So, I started Friday evening and continued literally all day Saturday. I baked and baked and baked and obviously overdid it. We have added a couple of dear friends from church, and so the total number of cookie plates I finished was 25. In addition to a few leftover dozens for my own family.

Purging: Sunday, I crashed. I went to church because my daughter was speaking. I left right after she had finished. As I was leaving, tears started welling up. By the time I got to the car, they were streaming down my face. When I arrived home, I was in full force, sobbing uncontrollably for no reason I could put my finger on.

So, I decided to write. Just grabbed a pen and paper and let it flow out of me. Initially, it was meaningless, surface stuff. Then I hit something hard. I connected my invisible CFS to hiding abuse when I was a child. I feel now like I did then -- this seems so HUGE and obvious to me; why can't anyone else see it and do something about it? Why aren't they reaching out to me with tenderness and concern and healing instead of annoyance and continual demands? The worst part? I've told them that I'm sick, but they don't seem to believe me. And I was connecting that to the abuse -- it seemed to reaffirm that even if I had told someone, they wouldn't have believed me anyway.

Finding support: I didn't say anything when the rest of my family came home from church. I let them go out delivering cookies and caroling without me. When my kids asked why I wasn't coming, I told them I wasn't feeling well. I could almost feel the eye rolling -- but I held my ground. I knew I wasn't up to it, so I didn't go.

That night, before bed, I asked my husband to read what I had written. He was visibly moved. He said he was glad I had written, because he had been feeling some of the same things from the kids (the older ones, at least). He has been downplaying my CFS in front of the kids because he hasn't wanted to worry them or freak them out, especially my young boys. He had been thinking that something needed to change, and my writing has solidified that feeling. He said that we're going to need to have a special family council where we explain this disease very clearly to all the children. We're then going to set up a plan where the kids will necessarily take over most of the household responsibilities.

I once asked "What if I never get better?" That thought was terrifying to me, because the idea of going on the way I have been was horrifying. I knew that something would have to change, but I also knew you can't change other people. I certainly didn't have the energy to force changes on my family. My husband, however, has not only the energy but the authority to require my children to change. If he demands it of them, they will respond. I will still need to enforce consequences, but where he leads, we will go.

I am so hopeful! For the first time, I do not feel alone in this. I feel like I am being given permission to heal -- and I don't mean that I'll miraculously recover completely and never have CFS again. I mean that I can pace myself and say no even to church and family and rest when I need to and let myself recover when I crash.

My husband and I celebrated our 20th anniversary on Wednesday. This is the best gift he has ever given me in these wonderful 20 years. This, I can live with.

Tuesday, December 9, 2008

I'm working at the store tomorrow. So, I'm having a discussion with my 15 year old son and my husband. Actually, it's more like two simultaneous discussions. I'm going over my son's schedule -- he has no water practice tomorrow, but he's staying after school to lift weights on Thursday. I tell them my daughter has work tomorrow, so my husband will have to pick up my son from school. They start needling me, telling me tomorrow isn't Thursday. They think I'm having a CFS brain freeze and I've got the days all mixed up. What the...? I finally clarify for them that my son needs to be picked up from school Wednesday AND Thursday, but I'll be the one taking care of Thursday. The light bulb goes off, and they finally understand.

SunlightThrough the windowBrightAnd brighteningMaking skies blue and bluerAnd trees green and greenerBut I can not feel its warmth.Its light can not touch my faceOr even cast a shadowBehind meBecause I am behind the wallLooking through the window.

Wednesday, December 3, 2008

I was feeling so hopeful since I started seeing my chiropractor. I was finally starting to feel better. I had fewer headaches, I was more relaxed, I was getting more restful sleep. I found myself with extra energy during the day. A barely acknowledged thought kept raising its head in the back of my mind, "Can this be it? Am I going to get better?"

Ah, but the holidays. The sneaky little holidays! Thanksgiving alone has sent me back to square one. There is no end in sight until January 1st. I know how to pace. I know how to take care of myself. But, between now and the end of the year, there are so many things that I HAVE to do. OK, I don't have to, nor do I want to, but I will. I will go to a Christmas party here and a school performance there. I will bake cookies and take them to neighbors. We will visit Santa. We will drive around looking at lights. I will do all those things that make the holidays special to me and my family. And sometimes, I will find myself enjoying the occasion and feel grateful I did this. But I will be putting healing on hold for a little while.

Meanwhile, I started Immunocal. Either it will work, or it won't -- I'm not anticipating any placebo effect, because I don't really believe that whey protein is the magic bullet that will make this go away. Prove me wrong, please prove me wrong! Dang, it tastes nasty, too.

About Me

I am a 46 year old stay at home mom. I have been married since 1988 to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome since about September 2006. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.